Ankylosis Spondylitis
About 4 months ago I had blood work done with my primary Dr and my sed rate was 32 & he recommended I go see a rheumatologist. I went to see the one I had before and she believed I may have Ankylosis Spondylitis but wasn't 100% sure. I hurt in my hips so bad for the last 3 yrs & no one could ever find the reason why. I just had a CT scan done & it showed Multilevel degenerative disc disease & SI joints are Sclerotic. When I researched that it said ankylosis Spondylitis so I'm wondering if she was right! I see her again in a few weeks but when she suspected me of having it she started me on Humira injections. I have such severe pain in my hips, mostly left side and lower left back pain that stops me in my tracks. Anyone else have Ankylosis Spondylitis
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Decades back I had spondylitis which the Docs/Chiro did not recognize and it caused me to retire. Now I understand psoriatic arthritis, which spondylitis is one of 5 forms.
I have been able to control it without meds, but takes a lot of effort, which is worth it. First, eliminate as much saturated fat and sugars as possible. Giving up cheese was tough, but I now have a vegan diet with fish once a week. You need to eliminate the sources of inflammation.
Research cytokines that are good guys that can become overactive and cause our immune system to respond which creates inflammation. Research anthocyanins which calm the cytokine storms. They are in deep colored veggies and fruit like red cabbage, blueberries, black beans, red onions, blackberries, black lentils, purple carrots and black grapes. The anthocyanins are fragile so it is best to have the fruit/veggies raw, such as a coleslaw with red cabbage, red onion and purple carrots (I buy at Whole Foods). Need to have them at least twice a day with fruits as additional snacks. I "hunt" each produce department for the black and blues.
Here is a link to a UK site PAPAA, Psoriasis and Psoriatic Arthritis Association. They have some good info and tips. https://www.papaa.org/news/current-features/
I am 69, diagnosed with Fibromyalgia in my mid-20s. About 10 years ago I was diagnosed with RA, and put on Methotrexate and Hydroxychloroquine. I'm now on my 7th (!) rheumatologist (because I told my then-rheumo I wanted to get off the methotrexate due to Peripheral Neuropathy and he told me "My way or the highway"). New guy also tested me for HLA-B27 which came back positive. So now I have the Axial Spondyloarthritis diagnosis too. He started me on Simponi infusions in March. 4 weeks apart for the first 2, then every 8 weeks thereafter. Next infusion is June 3. He told me not to expect any relief until the 3rd or 4th infusion. One thing that I have noticed is that over the last few years, my systolic reading, which had always been between 102-106 had begun to be measuring between 140 and 180! SO MANY DOCTORS would say, "140? That's good!" And I would respond, "But not for me it isn't." I have come down to in the range of 120 since the infusions. Not great, but better than it had been. Still feel pretty terrible, but I am keeping my hopes up. If it's not feeling better after the beginning of August, I will need to regroup.